Tuesday, February 9, 2016

1st Post Heart Surgery (Cardiology) F/up. Changes, adjustments, additions.

Today's Cardiology Appt went well enough, nothing to earth shattering. Dr.Earing and Nancy (NP) biggest concern was HR was/still is pretty high which is one of the things they had really hoped this MVR would help and so far Heart rate has not improved and if anything gotten higher. It is very possible as the heart heals heart rate will calm down some though this typically would improve if the heart had more time to relax in-between each beat so it's sort of a double edged sword - heart cant heal as well if heart rate is so high, the new stenosis in the new mitral valve won't heal/heal as well/improve if heart rate remains high as there is less good oxygenated blood getting to heart (explaining this the best I can recall). Apparently most people from what I've read who go in to OHS with overly fast heart rate come out of OHS with a slower rhythm.
Dr.E did opt to restart the Ivabradine, which is the med for to fast of (innapropriate) heart rate and heart failure and said he may opt to add back the Digoxin to but wants to do this all in a step wise fashion. He did say he felt we may be able to stop the new Ace Inhibitor (Lisinopril) in time as he wasn't so sure that would be needed long term. The 1 other med adjustment he did make today was to re-increase the Lasix (gets fluid off) back to the 60mgs, 2x's per day. That's kind of a bummer out of it all, right after OHS they'd decreased it to 40mgs 2x's a day which was a nice positive. =)
As far as the Chest Xray it showed a new, 2nd fluid pocked in the R lung, which I asked could that be related to the VPL Shunt to but he felt that was unlikely as it was new, and likely es along w the on-going cough I've had for some wks. They'll repeat an Chest Xray at the Appt f/up in 2wks to monitor this and I guess to watch heart rate w the meds added back in. Hopefully the cough improves soon as it is a bit disconcerting - the actual OHS incision doesn't hurt and is actually very reasonable (lol, at the Appt today they made a comment about this and my making it seem like almost nothing had been done) but the cough definitely gets some uncomfortable. On the flip side they did plenty of cont'd good natured kidding regarding my ability to fracture the bone from big toe right before this OHS 2.5wks ago and (my paraphrasing) 'Only you Erica could do this before such a big surgery'. =) What can I say?
I know the headaches have been some worse since right after this heart surgery and last year when 1 of the 2 shunts quit working (but we didn't realize that was the cause right away) I'd had an on-going cough for a month if not several months that was pretty bad at times so I hope that isn't the case this time! I will make an apt with Dr.Bragg in a few wks if things stay the way they are and don't improve.
Cardiac rehab is on hold till the foot bone heals, which the Ortho Appt last wk, the Xray still showed the fracture and hasn't exactly seemed like it's healing any to fast! I suppose my using it to drive despite the boot and walking on it unsupported the 1st 1.5wks didn't help a lot either. Once it does heal and I am back to walking on my own i'll start Cardiac Rehab though. Ortho just said to keep using the boot beyond this 2wks (next wk) till the black and blue and discomfort improved. Who knows, my body sort of does it's own thing, beats to it's own tune!?!?!?
Otherwise I asked about if I was ok to travel to San Diego in a couple wks to the WORLD Symposium (Lysosomal diseases) Mtng and Nancy, my NP said it all depended on if things stayed stable. If anything new cropped up they'd not ok it but she felt if things as they are now don't worsen/don't change there wasn't really a reason I couldn't and would give their blessing. I feel positive about it. =)
When going for the Chest Xray before the Cardiology Appt they have to get it approved (even though my primary insurer Prior Auth for imaging is written right in to my Adult Congenital Cardiologist, Peds Neurosurgeon when needed (several other of my Specialists are out of network-based in network Prior Auth coverage exceptions to but with more limited approvals) and yet I get imaging done at UW/AFCH for Dr.Bragg and just sign a form (but have never received a bill bc it's covered). Here at CHW they have to call the insurer, wait on hold for ridiculous amount of time (would be easier if they just called my assigned Nurse Case Manager at insurer as she knows this all) and then wait, wait, wait. Aarrgghh!!! It ends up the Radiology Dept which I do not at all blame for any of this non-sense ends up calling up to my Cardiology Team to see if they request the Xray/imaging as "medically necessary" which my Team does and then it gets covered - which it is already covered anyways. Non-sense I tell ya! And yes I am simply venting.
I got to CHW a little over an hour ahead of the appt to get Labs for Cardiology done (INR was 2.43 or something like that, very close to in-range so dose adjusted a bit and recheck in 2wks). After this and the CXR I went upstairs to Cardiology which thankfully wasn't to long of a wait (and I get it when it does take longer, just was tired today). F/up is in 2wks with another Chest xray and assess overall.
That's about all for now, have Neuro-Endocrine Appt tmrw (Weds) but otherwise the rest of the wk is free, have other things to get done and Z is back by his Mom this wknd so most likely he'll spend Sat night by me. I am sure he'll be a happy kid as it's been something like 3 or 4 wks since he's been able to stay overnight - (the Sat/Sun. I killed my foot which was the wknd before my OHS). I enjoy having him here and miss him so am looking fwd to the wknd. I have a ACHD Mtng at CHW Sat morning but then hopefully pick Z up later Sat. in the afternoon - I need to talk to his Mom yet.
Last but not least I went back to Sunday School this past wknd, was a pretty low key day, no real big or special craft but was really nice to see how excited my kids where when they saw I was back. Love them!
Thanks for stopping by,
Erica


Monday, February 1, 2016

Echo result (new MV gradient), weird!? Otherwise doing well (10ish days post)!

Things are going ok, pretty well I think - so amazed and HAPPY, it's been about 10days since the 3rd OHS and have been out and about some with my Mom, Sister and nephew/niece shopping. I sat in the van at a few stores and sat up front at 1 or 2 when done but others (Gordman's, Target for instance) walked around slowly and Z and I had some fun while doing so.
All the incisions look pretty good, the chest tube sites ooze some with a clearish fluid and very mild blood but there to not bad.
INR was checked this morn (prior to ERT), Cardiology called w INR result and 1.99, I'm not complaining but apparently even this they won't bridge (heparin/lovenox injections) and instead just increased my dose by 1mg to 7mgs every day vs 6mgs and 7mgs alternating.
 I'll check again next wk and if needed dose will be adjusted again to get it to the 2-3 range, their goal being closer to 3 atleast.
My Team seems to expect INR TO fluctuate quite a bit (bc of surgery, antibiotics and since being on Coumadin the past 2.5yrs my INR (blood thinner level) has been like a rollercoaster, for many reasons) so if needed they'll keep adjusting the dose as we need. Thankfully the only time we should have to go bigger (injections) is if INR where below 2.0 (not sure how low since 1.99 today!). - my range is now 2.5-3.5 but we have a little room they think (though may depend). We'll figure it out in time. 
Last wk when my Cardiology Team rounded they mentioned the Echo result, done the day prior and the NP mentioned something with a grade teacher being off. I wasn't entirely sure what she meant but she just said no one knew what it would mean + my Cardiologist didn't mention it when I saw him a few min later. 
I just was reviewing the many (MANY) test results received a on MyChart and  the Echo shoes the new mitral valve gradient is 7mmhg. Pet what limited I know, given we did surgery at 12mmhg gradient that puts the new valve at a mild/moderate stenosis? Maybe my Cardiologist thinks it will decrease, not sure but definitely going to ask next wk. Sure as hell better not get worse! Ugh! I am not worrying about it but needed to vent here a min.  <- Weird! I am definitely curious what this means long term.  I do think their having removed several med (digoxin, Ivabradine) and lowered a couple other doses (Lasix dose namely) + only adding a small beta blocker dose seems like a good sign? Again nit stressing just need to think about it some.
  Anesthesia and intubation after this 3rd OHS they left intubation for 2days, sedated if I remember right was slowly weaned over the next day. I apparently had some funny conversations during all thus - yeesh, lol! Perhaps a little like (as I was being sedated for this OHS) I apparently asked my Anesthesia Team I'd they could take pics of the OR. So weird on my part!
So far the cough has held on, worse sometimes than others. Sometimes can hear it as I breathe normal, weird but like a fuzzy/hacky sound and with breathing I don't know just a weird sound.
I see the Ortho dr. for my big toe/foot bone on Thurs. It has continued to remain pretty bruised and swollen but doesn't hurt to much. I have the foot boot which goes midway to knee
which hopefully comes off soon. I hate wearing it and don't at home but it does help it feel more comfortable when walking.
 As far as Cardiac Rehab, my Cardiologist  wants to wait to start Cardiac Rehab until this is healed (have a big boot to wear when out and about, I do not wear it at home). - as he said "You are the only person I know who could break a bone before a big surgery like this" ;) Takes effort (lol klumsiness)! Thankfully when I tripped, yet again today going up the stairs nothing hurt!
Hopefully the toe will be healed this wk or very soon!
I was laying on the couch last night, trying to fall asleep (easier to sleep on couch than in my bed/a bed) and although I can't say why I was thinking about this or even that it's the 1st time I've thought about it but how most people's normal is stars and stripes different than my 'normal'.  - We all function in the same world but my normal is so not a usual normal. I was thinking about how a 'normal' day for me is a lot of calls, scheduling/rescheduling appts, other mtngs and paperwork. How my normal is to get up and then once up for a while I begin to feel more normal. It's not at all unusual for me to have 2-4 appts a week, between ERT (Infusion), appt/Fup with one dr or another of mine who are all at minimum an hour away but then bc this is so normal for me it's also not unusual on better days to stop a place or 2, for groceries or pick up crafts for my SS kids or sometimes just bc I want to. I hate asking my Providers for help but it's not at all unusual to email/MyChart or other means with some of my Providers vs having to go in for an appt or to see what they feel re an issue. I don't know, no real reason for sharing this just lots of interesting thoughts when I think about my life vs many.
Went to ERT today in Milwaukee (Froedtert) which was fine - nice to be driving again!
I guess last but  NOT least going to sign this off by saying I've talked to my new Genzyme running team partner some. She us a former rare disease researcher and lives in AL I want to say offhand (down south) + her own daughter has a rare disease  (CCHS) so kind if cool! We'll meet for the 1st time, in person at the Boston Marathon in April but I've  really enjoyed our emails and messaged back and forh. Should be good!
Thanks for stopping by,

Erica